He had fainted when in his car with his eldest son and went to A&E because he felt unwell, but after having tests was sent home. Thirty minutes later he collapsed and died. That day changed all our lives.
However, I need to go back one year to give the background to ‘my story’. In 2003, aged 35, I was diagnosed with Dilated Cardiomyopathy after having had dizzy spells for two years
Family and friends couldn’t believe my diagnosis, which apparently carried a very real risk of sudden death. I had no symptoms, was not overweight and looked so well. I lived with my two boys and worried about something happening to me in the night, but thought it wouldn’t really happen, that sudden death thing. My parents, older brother and my children were tested but my younger brother, Simon, intended to go but did not make it.
It’s hard to find words to express how terrible the day that he died was and how that has felt since. I remember the moment when they came to tell Simon’s wife, my parents, my brother and I that they couldn’t save him. I recall saying his name over and over again. I thought that the world should stop.
It seemed like it wasn’t real. It felt weird doing normal things like paying for the car park ticket to leave the hospital and driving home. How did we do normal things when the worst thing had just happened? Numbed and in shock, I think our bodies functioned on automatic. I remember waking up every morning and it suddenly hitting me. I remember driving along feeling choked and physically sick. I couldn’t stop crying for three months and felt, at times, I wanted to scream. Our family, we had always been five, would never be the same again. I hated seeing my parents’ pain. I couldn’t handle the fact that they were good people who had always been decent and hard-working and now they had to bear this.
My parents remember feeling dazed and numb, thinking that it was unbelievable, that they couldn’t take it in. They felt helpless bewildered, angry and in turmoil. He looked well and had no symptoms. He didn’t seem near death. It didn’t seem possible.
My older brother was in total disbelief and couldn’t register or accept it. He put his emotions aside and went into practical mode, worrying whether Simon had made provision for his family. He felt a sense of responsibility towards Simon’s family, towards my parents and towards me. He thought that it wasn’t right to think about how he felt, although it didn’t mean that he didn’t think of Simon. He sat in the garden all night trying to work things out.
I was in a daze leading up to Simon’s funeral. We went to see him several times at the hospital Chapel of Rest. My sister-in-law and my parents organised the funeral arrangements with the family discussing what everyone thought. I wanted to be part of it and did a reading. My older brother helped carry the coffin and did Simon’s eulogy. One of the hardest parts of the funeral was seeing Simon’s four children. I felt so dreadful for them. The funeral made everything so final. It was, perhaps, comforting to see how loved Simon was, but we knew that anyway and didn’t need his funeral to tell us.
I didn’t really understand what would happen at the Inquest. It seemed like a very cold, matter of fact affair, a formality. It didn’t fit with my feelings of enormous sadness and despair.
Simon lived life to the full in every way. He was a marathon runner, football coach, ran his own successful business and was married with four children. No one could believe that he could die, just like that.
A tissue sample was sent to Dr Mary Shepard at the CRY Pathology Centre and confirmed as ARVC and my Cardiomyopathy was reclassified.
I wish I had dragged him to the hospital for screening. I asked him on several occasions and he was always too busy and, although he was always my ‘little brother,’ he was a grown man who had to make his own decisions. I firmly believe he intended to go for the tests but thought there was really nothing wrong with him and he just didn’t get there in time. It’s almost cruel that the one other person in the family who had it, didn’t make it to be screened. Even now I still think, it couldn’t, it wouldn’t happen to me or the children or anyone else in our family. But we know that it does.
I would never have thought that ‘my little brother’, the youngest in our family, would be the first to die. I think of our lives as children growing up and being so close, never knowing what the future held. I am left with a feeling of trying to make the most of every day. I feel that Simon was cheated of a chance. If only he had had the opportunity of a defibrillator.* I wonder why I got a chance and he didn’t, as if his death insures my life. That makes me feel that I have to make it worthwhile.
I think that it is something that you never really come to terms with – you just learn to live in a different way. I have struggled seeing my parents’ pain but feel there is nothing I can do or say to help them. Sometimes, it feels as though a bomb has gone off in the middle of our lives. Even though we all support each other as a family, it is difficult to understand each other’s grief. I had thought that my older brother and I might become closer through our loss as we shared our sibling grief. However, he didn’t seem to want to talk about it.
Although it felt as though a couple of people didn’t understand my grief, or how frightening it is to live with a condition that caused my brother to die so suddenly, most of my friends were a huge support, and continue to be. It made me realise what is really important in life.
I feel so lucky to have known my brother for his whole life – I knew him from the day he was born to the day he died. There was a year between us and we shared so much throughout childhood and adolescence. He was young and fit and had everything to live for. Simon liked everyone to be happy and he brought such happiness. I’ll never forget his smile. He was special in so many ways and we were all so proud of him. He inspired people, was respected by both young and old and loved by so many.
I see glimpses of him in his four children.
His memory lives on and he will always be a part of our lives.